A day in the life of Chrissy
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12:15 - lunch time.
Thankfully my boyfriend brought me lunch today so I didn’t have to spend time in the kitchen sorting it. For lunch I’m having whole grain rice vermicelli in a miso soup and a Diet Coke. After this I’ll need to go to the bathroom but I can do that on my own. I have a transfer board to get on the chair and handles in the bathroom to pull myself up and lower myself into position.
2022-02-15 12:20:27 +0000 UTC
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A day in the life of Chrissy
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11:25 - well this has been oddly exhausting. I’m going to chill for a bit and read a book before lunch. I’m currently reading Resistance by Mathew Mather and Lucas Bale. It’s the third book in a trilogy called Nomad.
While reading I’m sat on the sofa and have an electric blanket as my feet get very cold.
I’ll see you all at lunch!
2022-02-15 11:26:13 +0000 UTC
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A day in the life of Chrissy
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11:15 - Right, next up I’m taking my pills. Today I’m so late with doing half this stuff as I didn’t really think about all the time posting here haha.
Pills are:
10mg Baclofen for spasticity
150mg Sertraline for anxiety/depression
5mg Solifenacin Succinste Aristo which means when I need to go to the bathroom my bladder gives me plenty of time to get there.
2022-02-15 11:19:27 +0000 UTC
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A day in the life of Chrissy
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11:00 - I’m done on the phone, I’m now going to answer some more messages on here! Keep sending them!!
2022-02-15 11:01:10 +0000 UTC
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A day in the life of Chrissy
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10:25 - while I drink my coffee I call my Grandma in Germany. She’s got a busy day ahead meeting friends for coffee and cake!
2022-02-15 10:58:43 +0000 UTC
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A day in the life of Chrissy
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10:15 - Here’s how I make my coffee. I have a bit of trouble with the button but much easier than the alternative. The machine is connected to the mains water so always has boiling and chilled filtered water available.
2022-02-15 10:56:39 +0000 UTC
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A day in the life of Chrissy
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10:15 - I’m done! What do we think?
Next up, I’m off to the living room for coffee, once I’ve made that, I’ll update you. Oh for coffee I use vegan Nescafé sachets of coconut milk coffee and we have a machine I can reach that dispenses filtered boiling water, so I don’t have to mess with the tap and a kettle.
2022-02-15 10:16:29 +0000 UTC
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A day in the life of Chrissy
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09:00 - okay, time to get dressed, do my hair, and do my make up. This will take a little bit of time. I usually do this earlier, but as I said I slept in a bit as I was up late. My boyfriend should really be heading off to work now but he’s going to need help me get dressed first and then he can disappear to his office while I do everything else. Fortunately he works from home still most days so I have him around to help me. His children are old enough now that they have sorted themselves out, fed themselves, dressed themselves, and set off for school a little while ago.
So, first, my boyfriend needs to help me finish getting dry which means standing me up and drying the bits I can’t reach. Nothing more romantic than asking someone towel your butt. Then he will need to help me with my underwear, trousers and socks as I really can’t reach any of those things and into a bra. I can then do the rest as well as my hair and make up as everything I need is right here in front of me. As many of you have will guess this will take a while so if you’ve got chores to do, do them now and I will see you in about an hour.
2022-02-15 09:04:37 +0000 UTC
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A day in the life of Chrissy
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08:45 - I am done in the shower and my boyfriend has put me back in my chair on a towel. And wheeled me to the bedroom. I am now wrapped in another towel with a third towel around my hair. I’m now gonna have some breakfast and reply to some more messages that have come in this morning. Remember I’m going to be around a lot today so feel free to message or comment and, if you enjoy yourself, tip!
Oh, breakfast is tea with toast and jam. Jam is strawberry and rhubarb.
2022-02-15 08:49:03 +0000 UTC
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A day in the life of Chrissy
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08:10 - shower time. For this my boyfriend will undress me and then sit me on a special seat inside the shower. He can then leave me to it. I will shower pretty much like everybody else except the fact I am sitting down. I can do most things myself, including shaving my legs in there. I will need help at the very end standing up so I can do my butt. The heat of the shower makes me really really unstable so I cannot stand without him holding on. This is a fairly long procedure so I’ll report back once I’m out in 20 - 30 minutes or so.
2022-02-15 08:13:21 +0000 UTC
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A day in the life of Chrissy
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08:00 - I have finished with the messages and my boyfriend has exited the shower. I am creepily watching him dry and dress and then he will help me to the bathroom. At this time of the morning it means physically bending my legs, rotating me, lowering my feet to the floor. Then he will take my hands and pull me forward bending me in half. He can then pick me up and place me in my chair. I will go to the bathroom, do my thing! Brush my teeth and await his help getting in the shower.
2022-02-15 08:02:13 +0000 UTC
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A day in the life of Chrissy
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07:45 - I’m awake, a little later than usual because I went to bed late. I’m pretty much a solid so am just laying here like a brick. I need to go to the bathroom but I’m alone so will have to wait. Boyfriend is in the shower (that or a very clean burglar) so while I wait for him I’m going to answer some messages I have on here.
2022-02-15 07:50:51 +0000 UTC
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Happy Valentine’s Day everyone!
I’m busy getting ready for dinner (sorry for bad lighting). I hope you are all having an amazing Valentine’s Day and I want to say a huge thank you to everyone who has tipped a Valentine’s gift. They are always really really appreciated.
My gift to all of you comes tomorrow. I’m going to post first thing in the morning when I first get up, then update that post through the day, in real time, every single thing I do. It’s going to be a day in the life of Chrissy. Sadly not every day is like Valentine’s Day so I couldn’t do today. Not that I’d complain if every day was presents, fancy dinners and, fingers crossed for later, sex!
So I will see you all tomorrow when you can join me on an entire day in the life of me! Remember I’m in the U.K. so GMT times.
Love ya!
Chrissy 💖
2022-02-14 18:12:41 +0000 UTC
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I am finally over this bug, I’d cross my fingers if I were able! Back to regular posting and messaging from tomorrow. 💖
2022-02-10 21:28:29 +0000 UTC
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I wasn’t very well over the weekend. I am not sure what is going on, at first it was just some kind of bug. Everyone had it, so that was normal but unlike everyone else, I keep getting it over and over. Getting pretty sick of being sick!
So a positive; sometimes when I’m ill, not every time but this last time it happened. Something positive comes from being sick. I’m not sure if it’s because my immune system is busy dealing with something else or possibly because of the mild fever raising my internal temperature. But either way sometimes, when sick, I function significantly better. I find myself more responsive when I try and move things and more limber. I asked my neurologist about it, but he didn’t seem convinced it was real. I am wondering whether antihistamines would simulate a similar response if they calm my immune system. There are apparently some trials currently going on using antihistamines for people with MS but they are a while away from showing results.
2022-02-07 20:56:49 +0000 UTC
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Why are you not married?
Haha, ok I was going to ignore this one but I got it several times, so why not. I have a dream wedding in mind and an important part of it is that I walk down the aisle. I have made it clear to my boyfriend that I do not want to get married, or even engaged, until I know I definitely can, or I suppose definitely can’t, walk.
And if I never can, will I get married? I honestly don’t know. Maybe….
2022-01-31 21:36:57 +0000 UTC
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Is your boyfriend a devotee?
I got this question after the post yesterday. There are situations like yesterday where dating a devotee would certainly help. When I am struggling and needing additional help they would be eager to provide it. But in any committed relationship there are times when you need to step up and do things that are less than comfortable to help your partner. This was just one of those times.
My boyfriend has been with me since before my diagnosis and I’m very glad that he has remained by my side during it and in the difficult years after. But no, he does not identify as a devotee, he does it because he loves me but does not derive pleasure from those tasks.
2022-01-25 08:45:17 +0000 UTC
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Hi everybody, so at the end of last week I was taken ill with a stomach bug. I’m going to describe below what it is like having a stomach bug when you are also partially paralysed with MS. I’m not going to hold back, so some of it might be a bit gross. It is important to me to be real here, to share my life the way it’s actually like.
So when I woke up I felt queasy but was generally okay. Within a few hours I felt very sick and was running a fever. It’s got progressively worse, with my temperature rising, and me being sick over the course of many hours and through the night. The following morning I was feeling much much better.
When I am sick certain aspects of my MS get worse. The stiffness I feel in my limbs is significantly magnified and I get terrible cramps. What do you do when you get a cramp? You stretch it out. With my stiffness I am unable to stretch the cramp, so the cramp continues to hurt me until someone else can stretch that part of me in the right way. In addition to the usual issues with my legs being stiff I have trouble with my hands. They would just clench, with my nails digging into my palms, and I was unable to open them. I had to rely constantly on my boyfriend to unstick my fingers and stuff a sock, or something similar, in them so I did not hurt myself. He was also, always, stretching my legs and feet to alleviate cramps.
When I needed to be sick I could not make it to the bathroom so I needed to use bags. Which was another gross thing for my poor boyfriend to deal with. I was also unable to access facilities to wash my face so I had to keep a cloth nearby and my boyfriend brought me bowls of water. I was so stiff I was unable to be stood up or transferred to my chair. I was literally stuck on the bed. I was too stiff, and in too much pain, to be lifted or carried anywhere; I really could not move.
Because I was unable to get to the bathroom I was unable to do the things that people traditionally do in the bathroom. For this I needed to use these little bottles with like a funnel on top. During the early hours of the illness, when I was still able to manoeuvre into position. Even if I couldn’t make it to the bathroom. During the worst of it I had to where pads that I was able to go in to. This is an incredibly humiliating thing to do and not something I was at all happy needing to use. Or relying on my boyfriend to change.
Sleeping at night was incredibly difficult. I was unable to move into a position that was comfortable, in constant pain, and needing to be repositioned every 20 minutes or so to try and alleviate some of the discomfort.
I was so glad in the morning it was over and I was feeling better. And I am so grateful for my boyfriend for helping me through it.
If you have any questions about this experience please feel free to message me and I will answer them for you.
2022-01-24 21:29:50 +0000 UTC
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Hey, I’m not very well. I have had a nasty bug the last couple of days. I’ll reply to your messages once I’m better and I’ll tell you all about it.
2022-01-22 09:22:01 +0000 UTC
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Do you try to move your legs, even if you can not? What do you feel? I would very much like to see you trying to move some paralysed part of your ... legs feet, fingers (This was asked in Portuguese so I hope it’s translated right).
When I try to move something that just won’t move it feels frustrating, it feels like I can move the muscles but nothing happens. It kind of feels like they are trapped but not completely. It’s like it feels like they are moving, but are not. Like I’m wearing a mascot costume and can only move my toes inside the costume and not the costume toes themselves. I hope that makes sense.
The old video above includes a bit where I try to move my toes and I can’t on one foot.
2022-01-15 08:53:45 +0000 UTC
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How bad are your spasms? Can i see more of them when you’re barefoot?
The video is of me trying to shave my legs in the shower and shows some of the spasms I have e to deal with. They seem to come and go but thankfully, at the moment, I don’t get them too often.
They are easily triggered by positioning my foot so only my toes are on the ground, sometimes my feet go very hard and force this position. Usually they have to be stopped by someone else applying pressure on my upper leg/knee flattening my foot.
2022-01-14 19:16:32 +0000 UTC
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Remember, one of the main advantages of subscribing here is being able to ask me questions. I have been doing this for over a year and nobody has asked a question yet that I have refused to answer. If you prefer I do not share the question publicly then just let me know. I will answer in the message for you.
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What one thing, relating to your disability, could you not live without?
I think the obvious answer to this would be the wheelchair, but I suppose, technically, I could crawl around. I don’t leave the house very much anyway, so crawling and holding onto furniture or people, would do.
I don’t think my medication is life changing enough to count.
You know, I think it might be massages. Every part of me is so incredibly stiff if I don’t move them and although the exercises help a great deal I really think the massage I have every day makes a huge difference and without it I would be too stiff to move about. Plus, I absolutely love them. It is not only extremely therapeutic medically speaking but it’s also nice to be naked and that close to someone special every single day. And it is nice to see that even after all this time, everything I put the poor man through, and this becoming almost a chore, I still get an obvious physical reaction out of him when he rolls me over onto my back!
2022-01-13 20:45:42 +0000 UTC
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I decided to send off a sample of my hair for a food intolerance test. Here are the results:
Acute Reaction
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Food Sensitivities -> Fruit (Raw) -> Avocado
Food Sensitivities -> Fruit (Raw) -> Braeburn apple
Food Sensitivities -> Fruit (cooked) -> Prunes
Food Sensitivities -> Nuts -> Pine nuts
Food Sensitivities -> Spices -> Pepper (black)
Food Sensitivities -> Sweetners -> Sugar, brown (natural)
Food Sensitivities -> Vegetables -> Endive
Food Sensitivities -> Vegetables -> Kale
Intermediate Reaction
===================
Food Sensitivities -> Cereal or Grain Products -> Wheat
Food Sensitivities -> Cereal or Grain Products -> Wheat, ground
Food Sensitivities -> Dairy & Animal Products -> Boiled milk
Food Sensitivities -> Dairy & Animal Products -> Buttermilk
Food Sensitivities -> Dairy & Animal Products -> Egg yolk
Food Sensitivities -> Dairy & Animal Products -> Feta
Food Sensitivities -> Dairy & Animal Products -> Goats milk
Food Sensitivities -> Dairy & Animal Products -> Greek Yoghurt
Food Sensitivities -> Drinks -> Oolong tea
Food Sensitivities -> Drinks -> Orange Juice
Food Sensitivities -> Fruit (Raw) -> Cherries
Food Sensitivities -> Fruit (Raw) -> Figs
Food Sensitivities -> Fruit (Raw) -> Passionfruit
Food Sensitivities -> Fruit (Raw) -> Pink lady apple
Food Sensitivities -> Meat -> Liver (pig)
Food Sensitivities -> Nuts -> Pistachio
Food Sensitivities -> Sea food/Fish -> Red bass
Food Sensitivities -> Sea food/Fish -> Shellfish
Food Sensitivities -> Spices -> Cilantro (Coriander)
Food Sensitivities -> Vegetables -> Portobello mushroom
Food Sensitivities -> Vegetables -> Turnip
The acute reactions are the really bad ones and the intermediate ones are less bad. For most people, just cutting down on the intermediate ones would be fine, but I am attempting to remove all potential sources of inflammation in my body and create the perfect diet.
A lot of these are fine because I am vegan, but I am upset by a few of them. I absolutely love Portobello mushrooms and pistachio nuts. Oolong tea is also one of my favourite drinks, and I am devastated about avocados!
I knew about a few of these but was surprised by quite a few more. The site recommends trying something for six weeks and seeing how you feel so I will keep you updated on my new diet!
2022-01-07 21:33:05 +0000 UTC
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New wheelchair!
So, yesterday, I was sent off to one of the smaller hospitals on the outside of town, where wheelchair services are based. The chair I have been using was picked up during the pandemic by my boyfriend, I wasn’t able to go as I was shielding at the time, so they did the best they could with the measurements they had. I didn’t realise that my legs doing that shaking thing, that I have documented on here a few times, was actually a sign that my wheelchair was not set up correctly. My new physio picked up on it immediately and arranged a replacement.
So, I have a brand-new chair that has been set up for my precise measurements and then adapted a little bit while I was sitting in it. It is so much more comfortable and my legs are so much better behaved now! I have a super busy day tomorrow, and Friday, but I hope to get out soon and get some photos for you so you can see it in action!
2022-01-05 21:22:37 +0000 UTC
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Do you socialise with other people with disabilities? Do you ever go on a girls night out with a group of girls in wheelchairs?
I see the image you are looking for here and although it would be rather exciting to have a group of friends who are in wheelchairs, I’m afraid I do not.
I do not have many friends left from before my diagnosis, I suppose the simple truth is I couldn’t really keep up with them anymore. I do have some, kind of, friends who are other nannies and the mums of the kids’ friends, and one of them is in a wheelchair, but we are not close.
To be completely honest, other than my boyfriend, the vast majority of people I speak to are on here!
2022-01-03 21:19:41 +0000 UTC
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Happy New Year !! 🎉🎊💖
2021-12-31 19:25:59 +0000 UTC
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What is your absolute biggest fear?
I’m not sure if I have mentioned this on here before, so apologies if I am repeating myself.
My biggest fear is something like a house fire. I am not very fast and I don’t think I would be able to get out of the house on my own. I live with my boyfriend, but he has two children, and although they are 15 and 11 and therefore capable of getting out of the house on their own, if there is a problem I obviously understand that my boyfriend will choose his children over me.
2021-12-26 21:45:00 +0000 UTC
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Happy Christmas 🤶 🎄😘
It is currently Christmas Eve Eve and I will be taking the next two days off to enjoy Christmas with my family. I would like to wish each and every one of you an absolutely amazing time, if you celebrate, and a couple of days of rest if you don’t.
It has been a really difficult year for many many people and I know it is hitting even harder now the winter has come, but I hope we will have a much much better 2022!
Several of you have messaged about buying me a gift, you certainly do not have to but if you would like to you are more than welcome to. All you have to do is send me a tip in a message (remember OF keeps 10%) and let me know what you would like me to spend it on. Thank you so so much to those of you who have already done this, I really do appreciate each and every one of you for the love and support you give me!
Happy Christmas 🤶 🎄😘
Chrissy ❤️
2021-12-23 20:34:06 +0000 UTC
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Does your body become more flexible and easier to use as the day goes on? Does your balance behave in the same way?
Yes, essentially the more I use it the easier it gets. But it also resets really simply. So if I am as active as possible I do become more flexible and have easier control. However this is then lost overnight or even by sitting for a couple of hours. When I am unwell it makes it really hard to get back to doing things if I have been immobile for a long period of time.
As for balance, I am not sure. I could easily say that balance does get easier alongside flexibility but if I were to guess I think that is due to the flexibility and not to anything else. So, if this makes sense, my balance is the same but I have more control over it because of the flexibility being better. I hope that makes sense.
2021-12-22 09:06:10 +0000 UTC
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What is your most annoying habit or trait?
I thought the best person to ask of this would be my boyfriend; so I asked and he compiled a list of his top 150 things I do that annoy him. Kidding! Though he did have a few suggestions.
I apologise a great deal! Sorry!
I am usually exceptionally pessimistic or exceptionally optimistic, there is no middle ground with me!
I can sometimes be a little bit inappropriate in, perhaps, less than ideal situations. Usually when I try to be funny at a point when humour is not required.
I sing whenever the room goes quiet, no matter the room!
I think that is about it, really, I am close to perfect! What about you, tell me yours??
2021-12-21 20:46:24 +0000 UTC
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